impatiently waiting...a look into pre transplant life

i am exhausted sitting here. my eyes are barely open and the fog im my mind has become so thick that the simplest of tasks has become a chore that i struggle to get done. most of this is caused by the different pain meds and anxiety meds and antibiotics that im on right now, but some is just due to constant fatigue. my body is now working harder than ever to just be able to pull in a breath and exhale, to keep my heart pumping, to keep me alive. as we get sicker and closer to needing lungs we need to up our med game, we need more and more antibiotics and machines to help our bodies stay strong enough for this surgery that we can only hope we get the call for in time. heres a little look into my daily routine as of right now.

• 6am- set up iv antibiotic (mix the antibiotic, hang the bag, set up the tubing, flush and connect to my port) these ivs take 2 hours to complete and so im stuck wherever i hang it for a while.
• 10am- do morning breathing treatments, this takes about a half hour to 45 minutes and consists of an albuterol neb, a hypertonic saline neb, and a pulmozyme neb all while i wear my physio vest to help shake things up so i can cough it out easier. i then do a nasal rinse with water and a steroid, a nasal spray, and an inhaler.
• 11am- my breakfast (brunch technically....) with my morning pills, right now im taking 21 pills with my breakfast. 
• 1pm- time for another albuterol and vest treatment which will take a half hour to complete. and then lunch eaten with another 5 pills.
• 2pm- hang my second iv of the day and again im connected for 2 hours i usually do this one while connected to my bipap machine and take a small nap as im so exhausted by the day so far.
• 5pm- dinner time, with dinner i take 10 pills
• 10pm- this is the most annoying one, here we go, i start by setting up my feedings for overnight, i do 3 cans of tube feedings that run over 6.5 hours while i sleep, with these i take 12 more pills. i also hang my last iv for the day, but keep in mind it runs for 2 hours so i need to set an alarm for 12 to wake up so i can disconnect from it. i also do my nightly treatments, (the nasal rinse, the inhaler, the 3 nebulized meds, and the vest one more time) this all takes a good hour or so to set up and finish. i then put on my cpap mask and try to get some sleep!
• 5am- my feeding tube is done and i get up to rinse the line and disconnect before sleeping another hour when i have to take down all the old tubing and re set up my ivs for another day.

all in all i spend 12.5 hours hooked up to an iv pole. i take approx 48 pills per day, and spend about 2 hours doing nebulized treatments and chest physio, and i need to take in around 3,500-4,000 calories a day to keep my body weight up and make sure that im healthy enough for surgery. this isnt always consistent, sometimes im on more and sometimes im on less but this is an average day for me.

being on the list means that someday, hopefully soon, i can get a call for new lungs and cut out a good majority of the things on this list. the amount of pills i take will increase and it will be hard hard work but ill also get a life. theres not much time in between all the things i need to do each day to really live and thats what gets me. i like to think of myself as a free spirit but im so tethered down by all the meds and machines that i feel trapped in my own body right now. i struggle with my family because neither one of us really knows how the other is feeling, and it can be hard.

im very impatiently waiting on my call to come and bring me a new life, and im hoping with everything i have that these lungs work for me and i have many more years with them!!!